Registered User

Registered User

Registered User

Hiya Kriss,
Yes fine. Just changed my mind about the posting, but the emotion has passed, so I will post it as it may ring a bell with someone else.

Dad and I went to get mum some new clothes today - she's cooking in the Nursing Home - they don't seem to be able to turn the heating down! Little available in our town for people less than size 12. But that is by the way.
I held up a top, dad said "That's not mum", to which I replied "That's the problem, it is not mum, mum has changed." To which dad said "It is mum still."
Why did I say such a crass thing? I know it is my mum. Why did dad feel he had to correct me; doesn't he know that I have never stopped loving and respecting my mum? Isn't that evident in everything I say and do? But what was I saying?

I feel quite out of the loop on TP at present - so much of what many of you are struggling with now are vague memories; the pain and anguish has passed. No more sundowning, no more getting lost, no more falling over, no more worrying about how mum and dad are coping during the nights, no more struggling to understand speech. No more anything. I feel a fraud. The pain and anguish of every day living is gone; I don't have to worry about mum "wanting to go home" or being aggressive. No cares at all. Nothing. Mum doesn't need me. Would it make any difference to her if I never visited again? Maybe not. "Nothing" is not a nice place to be in either - because mum is there but I am irrelevant; so make the most of being needed.

I know there are other people in my life to whom I am not irrelevant, who need me (not least my dad), but they do not fill the "nothingness".
So what was I saying? Have I finally succumbed and begun to believe "It's not mum".?

That is not the point actually. It obviously makes a difference to you. I feel much the same with Jan, but I go anyway, and quite often am rewarded by just a hint of recognition, or, as yesterday, a sentence of three words [almost unheard of now, and would have been missed - or never said if I had not visited]

I often say to the doctors that the visits are more for my benefit than for Jan's as she is well cared for. If I did not go, I might well feel "No more anything. I feel a fraud. The pain and anguish of every day living is gone; I don't have to worry about mum "wanting to go home" or being aggressive. No cares at all. Nothing.

I treat each visit as if I were an actor about to step on stage for an evening performance and I think that is uncannily like it really is. An actor has a different audience each performance - so do I, as Jan is never the same two days running. An actor may get a great response one performance, nothing at all the next. So do I. An actor acts his/her way through the tears.

Finally, an actor steps out of this role when he/she leaves the theatre, and re-enters a different life.

Registered User

I can relate a little to that feeling of being "out of the loop". Its probably because of the scale of the trauma we have endured getting to this particular point, some kind of hangover? I feel I've been freewheeling for the last 6 months or so though Aunt is still very mobile and seemingly aware, the home has been doing such a wonderful job that I've felt surplus to requirements a bit. This morning has catapulted me back into the driving seat again as there is now a need to visit a consultant for a recurring medical problem so several phone calls later I have revisited the folders full of notes and documents and for a short while I was back in the thick of it. The house sale (or attempt at a sale) is still lingering and although it is painful to think of it reaching a conclusion the delay has allowed time to come to terms with the practicality of it all so I hope it will not be quite so emotional.

I seem to be wearing 2 heads, the practical and the emotional. I cope by switching from one to the other and trying not to let the 2 cross paths. When I'm wearing the practical one I probably say and do things that seem very cold to anyone who doesn't know or understand the situation.

I think your Dad will understand when you say or do somethink that is out of character - he will have been there too!

Registered User

Wow Amy, this is a new phase that I hadn't even thought about. I'd like to say first of all that you are needed on TP even if you are moving past the stages alot of us are in right now. You are just redefining your role as a care giver and your input valuable and appreciated!
I often say my Mom isn't Mom any more. I look at her all the time and think to myself, " who the heck are you?" It is like aliens abducted her and left in her place a sad replica.
I can see that there will come a time when I will have to figure out what to do with myself once AD doesn't dominate my time, my thoughts and my emotions. Right now it seems like there is no end to this. Perhaps there is a good lesson in there, don't forget we have lives to live and try to stay in touch with the world outside of AD. Easier said than done !!
Take care of yourself !
Debbie

Registered User

I held up a top, dad said "That's not mum", to which I replied "That's the problem, it is not mum, mum has changed." To which dad said "It is mum still."
Why did I say such a crass thing? I know it is my mum. Why did dad feel he had to correct me; doesn't he know that I have never stopped loving and respecting my mum? Isn't that evident in everything I say and do? But what was I saying?

I feel quite out of the loop on TP at present - so much of what many of you are struggling with now are vague memories; the pain and anguish has passed. No more sundowning, no more getting lost, no more falling over, no more worrying about how mum and dad are coping during the nights, no more struggling to understand speech. No more anything.

So what was I saying? Have I finally succumbed and begun to believe "It's not mum".?
Love Amy

The way I read it, you are trying to convince yourself that your Mum (the real one) has nearly left the scene now, and your Dad is desperately trying to convince himself she's still there for him. Your love of your Mum and HIS love for his wife are a world apart from each other, not 'more' or less, but way way different in nature.

But of course you don't want to accept that your Mum's journey may be nearing its end, that's why all those behaviours which were so distressing at the time are now becoming almost missed now they're in the past. And now you are having to re-assess where Amy is, where's Amy going to be when Mum doesn't need you so much and, eventually, when Dad doesn't need you so much either.
This awful "long goodbye" puts everyone's life on hold, and when you get your life back, you will be different people.

I don't know if that ramble made any sense at all, or just said what you were saying in different words - excuse me if it didn;t help at all, but it's meant with love.

Registered User

Thank you all for the replies.
Lynne I think you have hit the spot. On another thread you have said "I wish mum would have a massive heart attack..", but I cannot say that, I don't want to face the end, but now I am just in a void. Yes I am in a way envious of all those facing horrendous problems, because there is still life and spirit.

It obviously makes a difference to you. I feel much the same with Jan, but I go anyway, and quite often am rewarded by just a hint of recognition, or, as yesterday, a sentence of three words [almost unheard of now, and would have been missed - or never said if I had not visited]

Yes it makes a difference to me, it breaks my heart. A hint of recognition? Never. A smile? Sometimes. And I love it, and its my mum and I love her desperately and how I yearn for her to know me and feel her love. But if she was dead then I would finally have to accept that she was gone. But I don't want her to be. If I don't see her, it doesn't hurt as much, unless I talk on here. But if I were to stop going so regularly I will feel so guilty when she does die, that I have thrown away time that we could have shared.
So confusion still reigns, but tomorrow or Friday I will go over, and we will struggle to try on the clothes that we have bought, so that I can then label them. (Anyone know where you can get name labels printed for clothes?). And my husband asked me tonight was I going to organise a party again for mum and dad's anniversary. And if she smiles at me my heart will be warmed, and if not I will stroke her hair and face and say "You're tired today mum; it's OK, I'm so proud of you".
Strange, I think I've worked through this one. Tears have stopped; I feel calm - it is enough to go and hold mum, that is where I want to be, because I do love her, and I am proud of her, and I cannot leave her to journey alone.
Thanks for listening.
With love
Amy

Registered User

Hi Amy
I'm sorry you're hurting so much at the moment, all I can do is send a hug {{}} and then be practical. Labels, I think you can still get them from a John Lewis store, and they did used to do them by post. May be worth giving them a call.
Take care

Account Closed

.....when I will have to figure out what to do with myself once AD doesn't dominate my time, my thoughts and my emotions. Right now it seems like there is no end to this. Perhaps there is a good lesson in there, don't forget we have lives to live and try to stay in touch with the world outside of AD. Easier said than done !!
Take care of yourself !
Debbie

Rummy/Amy, I am feel like I am on 'catch up' tonight - last night I didn't have the energy to even sit upright at the PC ... how much longer can I keep up this physical 'running around'.. ? (I flopped on the sofa and watched the footie - that will be my 'positive' when I get to the Tea Room). Then after reading Amy's post felt I really should apprecaite (and do) being so exhausted....

But what you both (and others) have said on this thread struck such an arrow....

Amy, I know by now you are feeling much better and am so glad. I just wanted to thank you for sharing what you did. So much it evoked and provoked....

Thought for the day: 'We carry out 'tasks' - whether we're shopping, cleaning, mowing the lawn, making pasta.... and they keep us (carers) busy.... and whilst we are busy being busy we don't have the time to consider the underlying, heartbreaking, reason we are doing the task in the first place.'

Amy, on a lighter and practical level, do you really want to / have to sew in name labels??? Haven't you had enough of that with school unis???? (Although I do know there is something almost 'sentimental' about it!) Never used 'permanent markers'? Seems an easy option but 1) the 'wearer' doesn't have an itchy label to worry about and 2) the labels can be so personal - your handwriting if nothing else - nothing to stop you adding a little message along a seam.....

Registered User

Hiya Karen,
Been and had a trying on session tonight. Poor mum, never opened her eyes, and there's dad and me standing her up and sitting her down. Didn't seem to distress her though-was like a tired kiddy when you can get them into PJ's and they know nothing about it. Must admit, once we knew that sizes were OK, dad cut off the tickets and I got out the marker!
Pace yourself Karen, make sure that you have time for your son and husband, and for yourself. Easier said than done, I know. I'm on count down; as from September I'm reducing my hours to 50% - doing a job share. It has been a difficult decision to make, but I know it is the right one for me, and fortunately my husband agrees and we are in a position to do it (ex husband's do have their uses!)
And talking of footie, we've had a new telly. We'd been watching a portable after our other one gave up the ghost- my husband's been sitting a yard away from the screen to watch Leeds- now they are through to the play off he decided we needed a new one quick! I watch footie (house of men, no choice really) but can't say it does a lot for me!
Right, I'm waffling. Off to read another thread.
Amy

Registered User

No problem Margarita - hadn't noticed! Just got back from seeing mum, she was smiley today- very smiley- seems to have one good day then one sleepy day at present. Sound of Music was on TV whilst she was having her tea, and when the other residents came back into the lounge, there was a real 'family' atmosphere tonight.
Love Amy

Registered User

Me mum was watching also , mum even remember that she had seen it at the care home , but get the name of the film confuse with another film ,my mum gets like that has sleepy days ,

I don’t know why but every time I see that film & it come to the part that they sing , do a deer a female deer, ray a drop of golden sun I sing along & I get really tear full , tears just drop from my eyes & for the life of me do not no why .

Registered User

I'm sorry to hear how you've been feeling and also that I haven't been on here earlier to offer my support as you have to me. Everyone else has given you positive, heartfelt suggestions and advice; no more than I could add to but I'm pleased to hear you're on the up (well as much as you can be in the circumstances). Just to let you know I'm thinking of you and hope your day is a happier one.
Jann

Registered User

I know pretty much how you feel, I think. SInce Mum is now in the home, I'm not having to deal with a crisis every few hours, or jump when the phone rings. I know she's more or less 'ok' - being looked after well, talked to, joked with, fed and all the rest. I don;t have to be constantly worried anymore. And it is a new phase. It's like almost being able to get on with my own life again feels wrong or alien or out of kilter. I'm sure it'll pass - everything else seems to on this rollercoaster - and here will be new issues and dilemmas. For now, I'm trying to enjoy the breathing space and ignore the mixed feelings (I dread each visit, in case it's a difficult one, but always come away being really glad I went: our relationship has always been a fraught one, as Mum's a very stubborn character and I'm a very spontaneous one, but I feel so sad for her. Every time she smiles or laughs, it makes it feel worthwhile).

One quick hopefully handy tip: www.minilabels.co.uk did us a huge supply of sew-in printed names labels very quickly and cheaply, and were very easy to deal with. Hope that helps?

And hope you're having a good day today too - keep posting. We're all thinking of you.

Registered User

I'm glad to hear you're feeling better, Amy, and I'm also glad that you posted this. It helped me to think about a few things. My Dad was sent back to hospital for another assessment because he was refusing to eat, drink or take his meds and being aggressive again. He had become doubly incontinent and would not let anyone clean or shave him. To cut a long story short - he has been moved to a closer hospital now but visits for both my Mum and myself have become more sporadic.

It seems to have coincided with my sort of emotional switch-off (if that is what it is). A month or so ago someone posted a thread asking what they should tell their 13-year-old son about his Granddad with AD. Most people were saying "Let him cry etc." - good advice, but when I turned to ask my 16-year-old son what he would say, he said "I'd tell him to get on with it - I had to". So I guess I've been trying to "get on with it" and have to admit I feel better for it. Perhaps I'm lucky that I have lots of other things to "get on with".

But, of course my Mum is not in that place, she is still naturally stuck in the past with Dad. So when Mum gets worried because she hasn't visited Dad enough, I often feel irrationally annoyed at her. Or when Mum gets annoyed that Dad is not wearing his own clothes, it doesn't seem important to me, I have accepted that the laundry will lose them! One day recently a neighbour took Mum to see Dad. When Mum came back she reported that Dad had said my name - twice! I didn't feel guilty that I wasn't there - just felt pleased for him that he'd remembered his daughter in that rare moment. A slightly tact-less (different) neighbour asked after Dad the other day and then said "I hope I don't get it (AD) - I'd rather be dead". A remark like that doesn't even make me angry any more.

It isn't like I've stopped loving Dad - I've just stopped feeling upset about everything that happens with him - does that mean I'm cold and hard? When I do visit I also love it when Dad gives the very occasional smile, every one now is even more of a bonus, and if Mum hasn't noticed it, I point it out to her. I think what I'm trying to say, Amy, is that I think I have gone past that nothing-ness and reached a little bit of peace for now (perhaps the calm before the storm - who can say?) I hope that's where you're at too. {{Hugs}}